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MD Anderson

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  • Post
    • July 7, 2018 at 5:19 pm
    happyfeet123
    Participant

      Hi Everyone:

      I would greatly appreciate any input to my decision making.  I currently go to UCSF for all of my treatment and see a melanoma oncologist.  I went to MD Anderson for a second opinion and I am thinking about having my treatment at MD.  UCSF is a 4.5 hour drive in the car with no traffic.  Plus everything is so expensive from the parking to the hotels.  MD Anderson is around 6 hours by plane.  I would be able to have my infusions at home instead of driving every 3 weeks to SF.  I would go to MD for scans and anything else that is needed.  My dilemma would be the oncologist where I live is not a melanoma oncologist.  Also, I am concerned about the distance and the time it would take  to get to MD if my diease would progress.  One thought is I could cross that bridge if it happens. I am currently stage IV and doing very well on keytruda.  If you are in a similar situation could you please provide some input.  Good, bad and indifferent.  I really want to make sure I am making good choices in my care.

      Thanks 

      Happyfeet123

       

       

       

       

    Viewing 5 reply threads
    • Replies
        • July 7, 2018 at 6:16 pm
        Sharon93065
        Participant

          Hi Happy Feet Anonymous.  Because of my sucess with Opdivo, my friends son lives up by Orland,CA.

          His kidney cancer spread to lungs and he is doing Opdivo Maintenance.  And i think it's at UCSF also.  He was one of the first being treat there with Immunotherapy just this last fall.  Now that he is on maintenance he gets his lab work done locally then the drive every 4 weeks, unless he has Dr visit.

            • July 7, 2018 at 6:19 pm
            Sharon93065
            Participant

              Are the 3 week infusions 4 times?  Then monthly maintenance?  I am so fortunate to be able to drive 40 minutes to my treatment center.  Bubbles had to take a plane every month and rent a car when she was in one of the first clinical trials. 

              • July 7, 2018 at 6:48 pm
              happyfeet123
              Participant

                I go to UCSF every 3 weeks for infusions of keytruda.  I have been doing this for almost a  year and it looks like  will have another year to go if everything goes well.  I am thinking about going to MD instead of UCSF.  Just looking for pros and cons of my decision.

                Thanks

                Tammy

                 

                 

                 

                • July 7, 2018 at 8:43 pm
                Janner
                Participant

                  If you ever want someone to go with you, it's going to be easier/cheaper to get there via car than air.  Both places have stellar reputations but logistically a car may be a little easier.  While some warriors travel, it's always a little easier when treatments can happen closer to home.  And if you have reasons to be seen more often – are you always going to want to fly?  Sit in an airport, squish in a seat, transportation to MDA?  If you're not feeling well, are you going to be happier in your car or in an airport/airplane?  Just bringing up points that came to mind.

                • July 8, 2018 at 12:44 am
                MichelleRHG
                Participant
                  You might search here for jennunicorn. I think she is treated at UCSF and might share some information (specific oncologist, etc) if you contact her. The distance must wear you out!
                  • July 8, 2018 at 9:24 pm
                  jennunicorn
                  Participant

                    Someone else brought up a great point. Flying can be a lot more exhausting than sitting in a car for a few hours, especially on days that you're extra tired or don't feel great. UCSF was a literal life saver for me after first dealing with Kaiser when diagnosed. I am fortunate to live in the bay area so driving up to UCSF was only at most an hour in the car. I always had someone with me, hope you're able to have someone drive you every time. It absolutely gets exhausting, after a couple of years I was so glad to be done with the every other week trip up there although I do miss all my favorite infusion nurses and the great chats with my oncologist, Dr. Tsai.

                    Another option would be to get infusions at home and use UCSF for scans and follow up appts with your oncologist there. I wouldn't worry too much about the oncologist at home not being a melanoma specialist as long as you have the UCSF oncologist communicate with the local oncologist and they become a team. You'd still be able to email or call your UCSF oncologist with any speciific treament/melanoma related questions. But would take the stress of frequent road trips off you being able to do infusions close to home. If I lived a few hours from UCSF I would have probably done something similar to this.

                     

                    • July 9, 2018 at 2:55 am
                    BrianP
                    Participant

                      Happyfeet123,

                      Couple thoughts.  You said your local oncologist is not a melanoma expert but does he have much experience administering Keytruda?  That would be a factor in my decision making.  I've done both options you described.  For 2 years I drove 5.5 hours one way every 2 weeks and for about 6 months I flew back and forth to MDA every few weeks from North Carolina.  Personally the driving was much less stressful and taxing than the flying.  

                      I'm a big fan of everything MDA has to offer but not sure how vital it is for you to be seen there if things are going smoothly for you.  Having said that I think it was invaluable for you to go there and start a relationship in case you run into difficulties in the future.  

                      My 2 cents.

                      Brian

                       

                      • July 9, 2018 at 2:19 pm
                      TexMelanomex
                      Participant

                        Hey Happyfeet,

                        I'm a huge fan of MDA and they have literally been a lifesaver for me. I don't know a lot about UCSF but have seen very positive posts on here about their melanoma program. I think you have a few really important things to consider logistically…first the distance. I know people discussed driving vs flying but if you live in California or way out west that drive would be a killer every three weeks, It usually takes a few days to make that drive even doing 10 hours per day. Texas, like California, is massive and Houston is way down South. Cost should also be a consideration, whether flying or driving, costs are going to be substantial. I live in central Texas and it takes me 3.5 hours each way, I typically have at least one night in a hotel, meals, etc. If you are doing well on Keytruda does it really make a difference who administers the drug? The dosing and imaging guidelines should be the same no matter where you get your infusion. If your situation was different I might have a stronger argument for MDA such as clinical trial access to novel treatments and again I have found their teams to be outstanding (and it really is a team effort at MDA) but even then I would make sure that UCSF doesn't have access to the same trials before committing to travel that far. Even being relatively close to MDA the travel gets tiresome and expensive but as I'm sure you will agree there is no cost too high for living and being comfortable with your treatment team. I don't know if that helps but it is my 2 cents worth.

                        Warrior On!

                        Tex

                          • July 10, 2018 at 3:47 am
                          happyfeet123
                          Participant

                            Thanks Everyone for your input.  You brought up some very good points and I am adding it to my pros and cons.  Either way i am looking at having my infusions at home and scans/mri at either location(depending on decision)  i am really burnt out on traveling to sf every 3 weeks.  It is very draining and expensive.  

                             

                            Thanks 

                            Happyfeet123

                            • July 23, 2018 at 9:13 pm
                            Roborant
                            Participant

                              Tex, 

                              Is the trial you were in still available? I think I remember that you were the last of 24 availble in the phase 1b.  https://clinicaltrials.gov/ct2/show/NCT02557321 says Phase 2 will have room for another 120 patients, but this time it's 50 % Keytruda alone and 50% combination of Keytruda and intralesional PV-10. No word on when that actually becomes available. Your success bodes well that more patients will get a shot at this combination soon.Congratulations on your latest NED report. 

                              Happyfeet, For the moment it appears that the PV-10 monotherapy trial is available in California only in San Diego. MD Anderson is one of the other 20+ actively recruiting sites.My friend's wife commuted to MD Anderson from North Alabama for many years. Unfortunately,she missed out on imunnotherapies like pv-10 and the checkpoint inhibotors before she finally succumbed to melanoma 5 years ago at 42. My friend was fortunate  enough to obtain temporary duty for NASA in Houston for awhile to facilitate her treatment at MDA. Hope you find the best treatment for you.

                              Always uplifting to read stories of the warriors here having success fighting back and winning battles against melanoma.

                            • July 16, 2018 at 4:10 am
                            brianm
                            Participant

                              I went to SF from Reno to the Melanoma center at CPMC in SF.  Once I was diagnosed with stage 4, I used an Oncologist for my 4 nivo/opdivo treatments, then afer the first opdivo only treatment, I got a referrel to a Reno oncologist that works with my specialist in SF.   I go to SF for a second opinion and to talk to my specialist every 4 months, but take my every two week dose here in Reno.

                              So far it has worked well, and I get two opinions thoughout this treatment.

                              Thx,

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